The 2016 Dysautonomia International conference was an amazing experience. I learned a ton, but that’s not necessarily what stood out to me the most. For one weekend, I was surrounded by people like me. I have supportive friends, and a very supportive family, but no one who understands what I’m going through. I’m on my own in a sea of health. Not only did these people understand, but they weren’t 1000 miles away and separated by a computer screen. They were right next to me, just as nervous and excited as I was.
As someone who struggles with chronic illness, I never feel “normal.” When I look at the people around me, I see people who I simply could never expect to know what I’m going through, and not just because my illness is invisible. While there are those who are extremely kind and caring, I often feel that I am isolated, and in this battle alone. Why? I could never possibly expect someone to understand that I, as a 16 year old, don’t have the energy to go to the mall. Or the movies. Or stay after school for clubs, maybe not even be able to go to school at all (I know, lucky me)! Why I keep a blood pressure monitor next to my bed and salt my food religiously. And why I have a million alarms on my phone with the names of various medications. No one understands.
The amazing thing about the conference? I was surrounded by people who DID understand. Others who also perhaps felt alone in their battles with no one who understood; it was the most incredible feeling. To have conveniently placed seating everywhere so that you could take breaks whenever you needed to, to have great big bowls of salt at the end of every buffet, to have a dedicated quiet room full of salty snacks to keep you going…
I didn’t realize what was happening at the time, I was in the car driving home with my mom when she mentioned the normalcy of the weekend, and how happy it made her to see a bunch of teenage girls being normal teenagers. Because for one weekend, POTS was the new normal. No topic was off limits, we talked about everything from college to periods to meds to doctors. We commiserated over the lack of social or dating lives that we all shared. We laughed at our misadventures with clueless doctors, and talked about our hopes for the future.
I took part in many of the teen sessions – a teen chat with POTS doctors, 10 coping skills, thriving in school – but also learned about chronic pain, went to advocacy training, spent a bit of time in a session on physical therapy for POTS and EDS, and tried floor yoga. It wasn’t uncommon to see someone laying on the floor in the back of a session or with their feet up on chairs (I was one of those people). The doctors were friendly, very friendly, and curious, they wanted to know about our experiences and treatments and what we thought. I spent twenty minutes talking to a med student who was thinking of working with POTS patients, and I hope he does pursue it. I also hope that I was able to help give him a greater understanding of the complexities of POTS by explaining how it effects me.
At the end of the last session, I was saddened to realize that I would have to return to the real world and leave my new friends behind. No more bowls of salt at meals. No more “Does anyone have to take meds? It’s (enter time here).” No more feeling normal! But now I have a determination that I didn’t have before. I have a family of friends who understand me in ways I never thought possible. I want people to know about Dysautonomia, I want people to know about POTS. I want them to know that it has changed my life, my family’s life, and how I relate to people – able bodied or otherwise.